~ A Compendium of My Inane Ramblings, Photos & Assorted Detritus of Life

Category Archives: Autism

We were accepted into The Variety School of Hawaii this past week. Needless to say, it’s been quite a summer. From getting her diagnosis, to applying to The Assets School and then getting referred to The Variety School, it’s been a whirlwind. And here I thought I’d get to relax while she went to camp!

School starts for us next week & as much as I thought she’d fight us on it, because, lets face it, what kid doesn’t love getting to sleep in, she’s really looking forward to it. She’s counting down the days, looking longingly at her pile of supplies on the table that used to be our homeschool table, and talking about what she might do at her new school.

While we’re very excited that she’s going to be in a great place where she’ll fit like a hand in a glove, we’re more than a little concerned about the financial aspect of the whole endeavor. For a child like Aidan on the ASD, tuition is $28,500/year. We were able to get grant-in-aid funds to bring it down to $19,150/year. We’ve enrolled in Tricare-ECHO like good little lemmings. The school is great. They provide individualized instruction, speech therapy, occupational therapy, adapted PE, remediation where needed, enrichment where needed. Really it’s everything she needs. But, because they don’t provide ABA (applied behavior analysis) therapy, & therefore aren’t considered “approved ECHO providers”, ECHO won’t pay one thin dime. Of course.

Excuse me ECHO, I don’t want her behavior modified nor do I want her “cured”. I happen to like her just the way she is. She is incredibly gifted and if this school can remediate her working memory and her processing speed (& maybe as an added bonus, develop a few social skills) her IQ will be off the charts and she can talk to people about what she knows without scaring them off.

So the $64,000 question is this, to whom do I appeal this arbitrary decision? Surely I don’t take the word of a call center functionary? I know there have been instances of ECHO paying for special needs schools. I need to know who to talk to, how to get a hold of them & just how high this Warrior Mama needs to climb to fight. Because believe me, if there’s money out there that can be used to pay for her education, I’ll fight tooth & nail to get to it. Not just to save our family a few measly ducats but damnit because we’ve sacrificed for it and they owe it to us. She wasn’t even 2 when her Daddy went to Iraq, just a baby. He got home in time for her 3rd birthday. Tell me she doesn’t deserve a good education from her Uncle Sam.

So, like her doctors thought, Aidan has Asperger’s Syndrome (based on the DSM-IV) or Autism Spectrum Disorder (based on the DSM-V). What we also learned (but weren’t all that surprised about) was just exactly HOW gifted our child is. We always knew she was smart. We usually say that she’s “Too smart for her own good.” Based on the IQ tests administered, she falls at the very top of the highly gifted range, about a point from the superior gifted range. To be honest, that kind of blew me away. Because of her Asperger’s she has some issues with working memory & processing speed (typical problem areas for Aspies). But, with some neurotraining & education to develop those areas of her brain & bring them up to the same levels as the other areas, her IQ could go even higher…potentially limitless. I feel like my job as her mother just got a zillion times harder…raising a little genius comes with great responsibility.

We have not received an OFFICIAL diagnosis of an Autism Spectrum Disorder for Aidan yet.

We had her tested extensively in mid-June & we will receive the results in mid-July.

Because her psychiatrist & the neuropsychologist both said she presented as a stereo-typical girl with Asperger’s Syndrome, we are acting under the assumption that she has Asperger’s until we learn otherwise. I think it would be counter-productive to do otherwise.

I, personally, do not consider an ASD diagnosis to be a bad thing. For years we’ve been struggling with “what’s going on, why does she do this, why does she behave this way, is it us?” And to be honest, getting a diagnosis that tells us that it isn’t anyone’s fault takes an enormous load off my heart & my mind. We can research & learn how to handle a child on the spectrum.

My mother gave me the best piece of advice I think I could’ve possibly received in all of this. She told me that Aidan is still Aidan, no diagnosis or label changes that & we still love her, regardless. Amazing advice that I’ve taken to heart.

For the third time in the eight months we’ve lived in Hawaii, Aidan has wandered away from the safety of our home & small neighborhood enclave out to the main road. There’s a large playground near the top of the valley, we think that’s been her aim each time. There’s a creek that runs along side the valley where a lot of wildlife lives. I fear that if she doesn’t go to the playground, she’ll try to get down to the creek. Today was the third occurrence of her wandering and she was gone for at least an hour. If Ryan hadn’t brought her home, my next step was calling the Honolulu Police.

She told me she was going outside to play with her “friends” across the street. I say “friends” because the four kids that live across the street are not nice to her (nor me for that matter), and I really don’t like her playing with them. She’s oblivious to their snarkiness & rude comments but it still doesn’t make it right. Anyway, she said she was going to play, I initially said no, she begged, I caved, she went to play. After about 30 minutes I realized I hadn’t heard much kid noise in a bit, better go check (living in HI, we keep our doors & windows open for ventilation). The kids said she went off “with her friend” (which turned out to be a big fat lie). When I asked who, they shrugged; where, shrugs again. Thanks for the help. She was no where to be seen on the street so I called up to Ryan to come help me look for her. I stayed at the house while he walked around the neighborhood. He finally found her, out on the main road “barking like a dog.”

She had no idea that she could’ve been in any danger. But that’s the thing: children with autism are often the most difficult to teach about the dangers associated with wandering such as drowning, getting struck by a vehicle, falling from a high place, dehydration, hyperthermia, abduction, victimization and assault.

RESEARCH

The Centers for Disease Control and Prevention (CDC) estimates that an average of 1 in 88 individuals in the U.S. have an ASD that can cause significant social, communication and behavioral challenges. These challenges often present unique safety risks, including those associated with a person’s tendency to wander or elope from a safe environment.

According to data released in April 2011 by the Interactive Autism Network (IAN) through the Kennedy Krieger Institute (KKI):

– Roughly half, or 49%, of children with a autism attempt to elope from a safe environment, a rate nearly four times higher than their unaffected siblings

– More than one third of children with autism who wander/elope are never or rarely able to communicate their name, address, or phone number Aidan knows our phone numbers, my name, Ryan’s name, rank & where he works but has a hard time with our address. We need to work on this.

– Two in three parents of elopers reported their missing children had a “close call” with a traffic injury As busy as that main road is, this is my biggest fear. She just goes off into her own little world, exploring & imagining, not paying the least bit of attention to her surroundings.

– 32% of parents reported a “close call” with a possible drowning Knowing that she has no fear & has none since she was a very tiny baby, we put her in swimming lessons young, the kid swims like a fish. Of course, if she falls or is some how incapacitated, all of those lessons are right out the window.

– Children with ASD are eight times more likely to elope between the ages of 7 and 10 than their typically-developing siblings All of her wanderings have been right in that window…7 & 8 years old.

– Half of families with elopers report they had never received advice or guidance about elopement from a professional Nope, not a bit. All I know I’ve read online from my own research.

In 2012, the National Autism Association found that from 2009 to 2011, accidental drowning accounted for 91% total U.S. deaths reported in children with autism subsequent to wandering, and that 23% of total wandering-related deaths occurred while the child was in the care of someone other than a parent.

We’ve informed Aidan that she is no longer allowed to leave the house without Mama or Daddy with her. Each of her three wandering incidents have been as a result of us letting her go outside on her own, mistakenly trusting her. Now that we have a better grasp of what’s going on (or, more accurately, NOT going on) in that little head of hers, we’re hoping that prohibiting her from going out on her own puts a stop to the wandering, rather than having to put the whole house on lockdown. We’ve been lucky each time but God knows we can’t press our luck.

My parents came to visit, we hiked Diamond Head, ate Kahuku shrimp and then Aidan & I went with them to the Big Island for a few days where we saw a black sand beach, learned about growing & roasting Kona coffee, and we went to Volcanoes National Park, saw the lava fields and Aidan “woke” up Pele by yelling “Huka Pele!”, then we saw the caldera glow that night.

We finished our first semester of homeschooling without killing one another & we’re pretty sure we’ll do it again this fall.

Aidan started summer day camp where she is able to explore nearly everything Hawaii has to offer.

We’ve seen a number of Hawaiian creatures lately, a Hawaiian Monk Seal came up on a beach where we were swimming/surfing. Another seal was beached down the shore, and this seal swam along the surf seemingly looking for his buddy. Later we saw a large number of Hawaiian Green Sea Turtles when we were learning to stand-up paddleboard up the Anahulu River. Aidan & some of her fellow campers found a baby octopus at Ala Moana beach which they promptly named “Ocho” (one of her counselors took it home).

And that pretty much brings us up to today…

Today we began the process of having Aidan assessed for Autism Spectrum Disorder. Since we’ve been on island, she’s been seeing a great child psychiatrist at Schofield, primarily to sort out her ADHD meds. Her weight/BMI more or less bottomed out not too long after we got here and her pediatrician was concerned that it was mostly due to her meds. During an appointment shortly after the beach excursion where we saw the seal (and had a meltdown of epic proportion), Ryan was able to come along and ask some questions of his own. He said something like, “…if it were something like autism, I could wrap my brain around that…” and Aidan’s doctor said “Oh yeah, I see a lot of things in her that might put her on the spectrum.” I had to do a double take. We’ve been seeing him monthly since November or December and this the FIRST he’s mentioned this?? You’ve GOT to be kidding me!! So, in typical Mama style, I went home & began to over-educate myself about ASD & Asperger’s Syndrome.

We’re very blessed in that Tricare covers as much autism care as it does. Just the assessment itself is over $3000. If it turns out that she is on the spectrum, we’ll enroll in Tricare ECHO (Extended Care Health Option) which will provide funding & services for private schools (if we so choose), skills trainers, therapy, more testing, etc. I know that it doesn’t cover everything & you can bet that I’ll be banging down the door to push for additional funding for the children of active duty servicemembers with autism.

PS. Like I said, I’ve over-educated myself on the topic & I hate the idea of my child being a “problem to be solved” thus, I hate the puzzle piece logo of most Autism Groups. However there is an alternative group that embraces the idea of “Neurodiversity” and, like me, shuns the idea of the puzzle piece representing them. I plan to write more about the idea of Neurodiversity in a later post. Just know, I don’t like the puzzle piece.